02/09/2003

BY JENNIFER D. JORDAN
Journal Staff Writer

After a 90-minute bus ride, Matthew Lemek starts his day in a school gymnasium in Portsmouth, walking off pent-up energy and getting comfortable in his own skin.

Without prompting, he marches around the gym, singing a favorite song.

"C is for cookie, good enough for me," he repeats over and over and over.

"Matthew, walk normally. You're not a soldier," teacher Kim Schuller says matter-of-factly.

He stops marching and goes silent. For a few minutes. Then the 10-year-old begins singing again.

Across the bay in South Kingstown, amid the din of a second-grade classroom, Kody Gallup retreats behind a row of green plastic bins, leaving behind the chatter of classmates. Clutching a favorite book about sharks, he sits in the corner to read. His lips move as he turns the pages, reciting passages again and again and again . . . to himself.

Matt and Kody are part of what many call an epidemic afflicting a growing number of children throughout Rhode Island and across the country. Their communication and social skills are so impaired that they find it almost impossible to navigate our larger, unpredictable world.

Repeating familiar words and phrases, reciting songs, withdrawing into their own world often helps them to get through the day.

They are among 500 children in Rhode Island suffering from one of the disorders along a spectrum that starts with autism and includes two others: Asperger's syndrome and something called pervasive developmental disorder not otherwise specified.

Journal photo / Frieda Squires Matthew Lemek of Richmond clearly doesn't feel comfortable getting a hug from his sister Meredith. "Socially, Matt's behavior can be difficult to understand," his mother says.

Up from 41 identified cases in l994, Rhode Island's current autistic population has increased by more than 1,000 percent in eight years. Similar increases are being experienced across the nation. The Center for Disease Control and Prevention recently reported a 10-fold increase in the disorder nationwide since 1980.

Did we do anything wrong?
Kelley and Michael Gallup suspected something was wrong. Kody, their middle child, was 3 and he wasn't speaking. He often wouldn't come when they called his name.

They were heartbroken when they were told that Kody had autism.

"It takes everything away, all the dreams for that child," Michael Gallup says.

"Had we done anything wrong to cause this?" Kelley Gallup often wondered in the middle of the night.

Maureen and Michael Lemek, of Richmond, struggled with the same gnawing questions.

Matthew, their first-born, had a hard time playing with other children and became easily overwhelmed and frustrated. He was diagnosed when he was four with Asperger's syndrome.

"I felt like someone kicked me in the stomach," Maureen Lemek says. As a pediatric audiologist with a background in communication disorders, she berated herself for not figuring it out sooner.

Experts across the country agree that autism is a genetic disorder in the brain four times more likely to affect boys than girls. But they don't agree on what's causing the dramatic increase.

There's no question that broadening the definition of autism in the l990s to include two related conditions has contributed to the rise. But doctors, psychologists and educators disagree about how much that expanded definition accounts for the explosion.

One popular theory is that childhood vaccinations are somehow triggering autism. So far, no rigorous scientific study has provided evidence of such a link.

Anne Walters, who runs the private special-needs Bradley School in Portsmouth, says she suspects an as-yet-undiscovered environmental influence. However, her colleague Rowland Barrett, at Bradley Hospital in East Providence, is skeptical.

"I think it's been an undiagnosed and an underdiagnosed problem," Barrett says. "I think the numbers have always been there. It's just awareness about the disorder has increased."

The Gallups and the Lemeks have stopped worrying so much about what might have caused their sons' autistic disorders. They are far more focused on how to stop autism from overtaking their sons' lives.

The January tree

Transitions -- changes of any kind -- are apt to throw a child with an autism disorder off course, often causing an emotional meltdown.

That's why the Lemeks start preparing Matthew for the switch from summer to winter clothes in August, reminding him each week that soon he'll have to switch to long pants.

Even then, he resists and tries to wear shorts as long as possible.

To ease into the chaos of the Christmas season, his parents try to restrict talk about Santa, presents and Baby Jesus to the month of December.

Leaving Christmas behind is just as hard. Recognizing his own discomfort a few years ago, Matt invented what the family calls the January tree to help ease him out of the holiday blur.

He designed an elaborate tree out of a pink feathered boa and fragile sticks as branches. He found a silver star and placed his creation atop an overturned laundry basket covered with an ivory blanket, mimicking a Christmas tree stand.

He knows the tree must come down each year at the end of January, but the strategy helps him cope with the shifting seasons.

"You're always trying to balance accepting who he is and appreciating his different abilities with giving him the skills to function in the real world," says Maureen Lemek.

The Lemeks regularly weigh Matt's needs against those of his younger sister, Meredith, a second grader who doesn't always understand why Matt does what he does. It's hard to explain to a child why a long-awaited trip to the Roger Williams Park Zoo was cut short when her brother became so agitated the family had to leave.

Matthew struggles daily between the disorder that can separate him from others and his naturally affectionate nature.

Matthew will put on puppet shows for Meredith and sometimes creates costumes for plays in which they both perform.

Other times he avoids contact.

One day, Meredith tries to play with her brother.

Matthew freezes, his arms tight against his body. "Get away from me, Meredith!" he says.

"She just wants to play, Matt," his mother says.

He immediately walks over to Meredith and hugs her.

"Socially, Matt's behavior can be difficult to understand," Maureen Lemek says. "You learn their signals, and try to remove them from situations they can't handle and give them outlets."

Matt's parents work to strike a balance between letting him express himself and trying to modify his behavior.

When the family goes hiking in the woods of the Arcadia Management Area, not far from their Richmond home, Matt frequently assigns them roles to play, as he directs the family show.

Another day, his parents and younger sister Meredith become dwarves in his rendition of Snow White. A stand of trees is the cottage. And Matt critiques everyone's performance.

"Sometimes it's irritating and sometimes it's really fun," Maureen Lemek says. "It's like he knows he's not sure how to engage us, so he pulls us into a familiar story. Sometimes I tell him I want Matthew, not Matthew-Pinnochio, and he knows. He tries."

$20,000 a year
In the late 1990s, the spike in autism numbers prompted a statewide study on the effect on local school districts. That study led to the creation of an autism support center at the state Department of Education to train teachers and provide guidance to local schools.

The department estimates it costs $20,000 a year to educate each child with autism spectrum disorder, compared to $15,000 a year for other disabilities and $7,500 a year for mainstream students.

Last August, school officials in South Kingstown discovered that they had what they thought was a "bubble" of autistic children at Matunuck Elementary School. Four of the district's elementary schools each had one or two autistic children; Matunuck had five.

Kody Gallup, now 8, is one of them.

To help him, the district hired a special education teacher to run a new program that emphasizes social and communication skills and provides Kody and the other students with the routines and predictability they need.

"The problem starts as neurological, but it then becomes not having access to the world around them," said Kevin Plummer, a psychologist who works with the South Kingstown school district. "We want to get these students in the game early and make sure they're not isolated."

Kody relies on a schedule of pictures and words stuck on a two-foot-long Velcro strip -- a map that guides him through his day. These small, laminated pictures of an addition sign, with "math" written underneath, or an American flag, to signal the pledge of allegiance, serve as visual cues warning Kody of what's coming next.

He removes each small picture just before the next activity, then sticks it back on the timeline when the task is complete.

'Twinkle, twinkle little star'
On this winter day, after each task, Kody keeps returning to the shark book he wants to read in the quiet corner with the squishy bean bag chair he loves to curl up in.

His special education teacher, Jen Duggan, gently takes the book from him.

"Here, keep it safe. Keep it safe," she repeats, as she puts the book back on the shelf.

Kody relaxes, the words pacifying him.

His one-to-one teaching assistant, Deb DeLuise, convinces him to come to the occupational therapy corner, and he follows, flashing her an angry look, mouth clenched, eyes glaring.

The activity is designed to help Kody relax and gain control over his body.

He lies on his back on a long flat board that swings from ropes attached to the ceiling.

Kody's sneakers dangle off the end, and he stares at the square pattern above him. He knows the routine, and counts in groups of five, up to 100.

"Five, ten, fifteen, twenty," he recites with DeLuise, with each gentle swing.

Then, he loses interest in his counting lesson and begins to sing to himself.

"Twinkle, twinkle little star, how I wonder what you are," he chants, over and over.

As a reward, DeLuise shows him two fingers and tells him he has two minutes to lounge in the baggy chair with his shark book.

'No tech talk' "Every day, we're trying to stay one step ahead of the disorder," Duggan says of the cues and emotional support Kody receives. "Sometimes you're ahead of it, and sometimes you're not." Kody returns to the regular second-grade classroom next door to watch a video about Antarctica. "Technology type stuff, he just loves," Duggan says. "Anything on a computer, a TV he just absorbs all the information." Kody begins murmuring, again and again, "doe, doe, doooooe, doe," as his fingers play with a bright orange action figure. "Shhh, Kody, you have to be quiet," says a little girl with pony tails sitting near by. DeLuise places a Velcro-backed card in front of Kody that has a face with a finger in front of lips and she makes the same gesture. The laminated visual cue reads "no tech talk," a term for the chanting and repetitious sounds of his inner world. But Kody continues to moan softly, even as his eyes focus on the television screen. Gradually, he quiets down. Later, Duggan watches carefully as Kody reads; his memory is so developed he often memorizes favorite stories, then recites them instead of reading the books. "Reading is more difficult for him because of language processing problems," Duggan says. "If you're not talking in complete sentences, it's hard to write and read complete sentences." The key is to find methods that make sense to autistic children. "It's not that they can't learn -- it's how do they learn best?" Duggan says. "You just have to find that learning style. It's just much more difficult."
'I'd just be distraught'
Matthew's first venture into public school was a failure. By second grade, his behavior went "off the wall" Maureen Lemek says.

"He would yell and scream and just get overwhelmed. The unpredictability of being in school with other kids was just too much."

Some mornings, Maureen Lemek would dissolve in tears after getting her 7-year-old on the bus.

"I'd just be distraught, not knowing if I did the right thing, knowing he'd fall apart as soon as he got to school."

Three years ago they found the Bradley School in Portsmouth. Run by Bradley Hospital, the nation's first psychiatric hospital for children, the school requires Matt to spend three hours a day on a school bus, but the Lemeks think it's worth it.

But they are eagerly awaiting the opening of a new $4-million facility in South Kingstown next month , which will cut Matt's commute down to 30 minutes each way.

At Bradley, Matthew, now 10, is in a class with seven other students who have similar problems.

'I can't find an F' One recent morning, Matt starts to stiffen as he does a word search worksheet. He splays his hands over his ears, elbows on his desk, and starts to make a guttural noise. "Uhhh, uhhh," he says. "Use your words, Matt," his teacher says. "I can't find F," he says in an annoyed voice. "That's okay, you'll find it. Keep looking," she encourages. He finds F. A few minutes later, he's earned a free period, when he can pick what he'd like to do. His teacher, Kim Schuller, breaks up the day into half-hour increments. Each time a student completes a 30-minute block, following directions and avoiding an outburst, they get a star next to their name. After several, they can take a free period. He checks out a Disney Web site on the computer, then heads to a corner, where he rolls, back arched, on a large rubber ball. He pushes back with his hands above his head, then bounces back up when his feet hit the floor. Back and forth, back and forth. The rolling motion comforts him.
'You never know what will happen'
While Kody can say words and often drifts into dialogue from Monsters Inc., Ice Age and other favorite movies, it's hard for him to sustain a conversation, even with his parents.

"Do you want help with that, Kody?" his mother asks one afternoon as she prepared him an after-school snack.

"Help," he responds.

Kody is affectionate with his parents and siblings and makes eye contact easily. He can read, tell time, tie his shoes and ice skate.

A home-based therapist comes to the house three afternoons a week to work on improving Kody's social and communication skills. This also gives Kelley Gallup time to bring Kody's older brother, Kyle, to hockey games, or spend time with younger sister Kaitlyn.

"We don't know where he'll end up, so you just have to focus on today," Kelley Gallup says. "You try to look to tomorrow, but not too much further than that."

The Lemeks feel the same way.

Instead of planning the future, the family focuses on the present.

The experience has taught them to see beyond his disability, and more deeply into who their son is.

"I've always thought he was an amazing kid, and I still do," Maureen Lemek says. "You never know what will happen in the future with anyone. But I am completely confident that our son will meet his potential."

For now, she savors each small success as it comes.

The most recent is a 5-by-7 photograph that sits on the television in the living room.

It's different from all the family portraits and pictures of Matt and Meredith throughout the house. In those, Matt's gaze is averted to one side, or his face has a blank expression.

In this new picture, Matt sits close to his best friend at Bradley.

Their heads close together, arms around each other's shoulders, both boys look straight into the camera lens, contented and free.

Matt is smiling.

See a slideshow of Matt and his family